International effort harnessing the collective voice of primary care

The COVID-19 pandemic highlighted deficits in and the fragility of our health care system, and it emphasized the vital role that primary care providers play in the health and well-being of individuals, families, and communities. Any health care reform undertaken to address these problems should be evidence driven, but in Canada and globally we have gaps in data that, if filled, could address critical issues in terms of understanding strengths and weaknesses of primary care delivery across different systems, particularly from the patient’s perspective. Indeed, Canada does not have a comprehensive primary care information system, either across the country or within provinces and territories. Primary care performance is mainly studied using provincial administrative data, international data from health policy surveys,¹ or aggregated data from the Canadian Medical Association.²

Commonwealth Fund surveys of patients and clinicians conducted in industrialized countries are often cited to describe primary care in Canada.^1,3,4 These surveys, based on samples of 1000 patients or clinicians per country, have shown that primary care delivery in Canada ranks poorly versus that of comparator countries. For example, in a 2022 Commonwealth Fund survey, Canada ranked eighth out of 10 countries (and below the Commonwealth average) with respect to primary care physicians’ use of personnel within their practices, such as nurses, to monitor and manage care for patients with chronic conditions who need regular follow-up care.⁵ These disappointing results have helped put primary care on the policy radar in Canada.⁵ Yet Commonwealth Fund surveys have limitations. Notably, their small sample sizes and their inability to link providers’ or organizations’ characteristics to patient experiences do not allow for meaningful analysis at the regional level where policy decisions and practice improvements are often made.

Patient-Reported Indicator Surveys initiative

An opportunity to produce better evidence about primary care has arisen from the Organisation for Economic Co-operation and Development (OECD) health ministerial meeting held in January 2017, where an international consortium of experts recommended that the OECD develop and implement patient-reported experience and outcome measures that reflect what matters to patients.⁶ Health ministers specifically requested that the OECD develop and implement health indicators to measure and compare patient-reported experiences and outcomes in health care across OECD countries, particularly for people living with chronic health conditions.⁷ The OECD responded by creating the Patient-Reported Indicator Surveys (PaRIS) initiative.⁸ Twenty countries (18 OECD members and 2 non–OECD members) have worked together to develop, standardize, and implement a new generation of indicators that measure outcomes and experiences in health care that matter most to people.¹ Initial survey development took place between 2017 and 2020 with primary care providers, patients, researchers, and policy-makers involved. With the endorsement and support of Health Canada, ministries of health from all 10 Canadian provinces are participating.

Canadian data collection

In Canada, PaRIS represents the first opportunity for primary care clinicians, practices, and patients to have their voices heard through such a large survey effort on this topic. A core element of the PaRIS approach is the international standardization of instruments and procedures for data collection and sampling to facilitate comparisons and international learning.⁸ The PaRIS initiative fills a critical information gap in primary care by focusing on patient-reported experience measures, which measure how patients experience health care and refer to practical aspects of care (eg, accessibility, care coordination, provider-patient communication), and on patient-reported outcome measures, which provide information on outcomes (eg, quality of life, physical functioning, psychological well-being).⁹ These data will be linked to a short organizational survey filled out by a clinician or by office staff to provide information about the structural characteristics of the practice or clinic. A field trial testing data collection methods was completed in 17 countries, including Canada, in December 2022. A total of 10,365 patients and 529 practices participated. Data management and analyses of the field trial data have been completed; the main survey is being conducted between May 2023 and January 2024.

The process of strengthening primary care through financial and human resource infrastructures requires data that include patients’ reported experiences and outcomes linked to providers and their practices. The PaRIS initiative represents an opportunity for primary care practitioners, particularly those participating in practice-based research and learning networks, to help strengthen information about primary care delivery and about their patients. Data will be provided back to practices to inform quality improvement initiatives, reported (in aggregate) to patients and to health system planners, and made available for research. These data can also be used to enhance decision making related to investment in primary care.

The Canadian Primary Care Research Network (CPCRN, formerly known as the Strategy for Patient-Oriented Research Network in Primary and Integrated Health Care Innovations) is coordinating the implementation of the main survey, having shepherded Canadian participants through the field trial. The CPCRN was established in 2015, funded by the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research. Between 2015 and 2021, the CPCRN established the groundwork for conducting high-impact, cross-jurisdictional research that integrated evidence into policy and practice. It is this network, including its partners such as the College of Family Physicians of Canada, that will support active use of the data for practice improvement. As a pan-Canadian effort, PaRIS Canada will draw on the established infrastructure of CPCRN coordinators and the Canadian Primary Care Sentinel Surveillance Network of 1500 clinicians, mainly from academic practices and other community-based practices.

Guidance for health care investment

Engagement of primary care clinicians, staff, patients, and ministries of health is key to the success of this effort. Understanding patients’ perspectives regarding their health status and experience of care is also essential to supporting person-centred approaches to care, improving quality and value-based health care, and evaluating the impact of health care interventions in primary care.¹⁰ Standardized and routine collection of patient-reported experiences and outcome measures is key to making comparisons at the regional, national, and international levels. These comparisons can help identify variation in forms of practice support, patient experiences, and patient-related outcomes, and they can help direct investment in and improve decision making for health care system improvement.

Conclusion

Participation of primary care providers in PaRIS, both in the current survey and beyond, is important. It is an opportunity for us to collect and use information from our practices in order for us to play a pivotal role in primary care reform, especially in efforts to improve quality of care for those living with chronic conditions. This is the largest ever practice-based primary care survey, across Canada and worldwide. We hope all primary care providers will use this survey as an opportunity to harness our collective voice in reporting the key role that primary care plays in helping patients live better with chronic conditions. With efforts from the CPCRN and the Canadian Primary Care Sentinel Surveillance Network’s members, this group can, together, shape an improved primary care health system based on Canadian values.